Words,Truth,Nervousness.......

 Before you read this ....it has some really personal stuff, stuff I was not going to put on the internet but I feel like it is a very big part of my frustrations and ...you don't have to read this unless you want to.

 I have had a really bad cold for awhile...thankfully it is getting better.

Colds or any kind of sickness really drains me.

I had an appointment to see the Dystonia doctor this week and I was far more nervous than usual...sometimes I am not nervous at all , I just go see a doctor and don't really think much about it.

My parents and I left the day before and stayed with some friends because the appointment was the next morning and we live a ways away.  This was a very good thing...because I had a lot of laughs that evening and being with friends always helps.

Anyway...the appointment was o.k. , The Dr. wants me to have a genetic test to see if I have one of the two most common Dystonia genes....why?

Because this would mean if I had one of the genes I could have brain surgery.

If  I don't then he would just  treat  the symptoms ...botox, drugs, that sort of stuff...but botox cannot fix my back anyway. ( I am pretty crooked if you don't know)

Yes I got worse.  I get to stop the levadopa and try some other drug.

Drugs..Drugs...Drugs........I guess I could always "Just Say No!"

Well I am going to try the new drug...if it helps it would be good, I am just worried about the side effects.

Anyway....I have been having a ridiculous time keeping my weight on, yes it has pretty much always been a problem. 

Part of the Dr.s plan was encourage eating....I eat! I am so frustrated....I have even had doctors say they didn't believe me when I told them everything I ate the day before.  

The reason I was so nervous....some of the stuff in my records is not the truth and It bothers me very much.  

I have had a doctor say I was self- injurious after I had one of my seizure-like events and fell through a glass coffee table and had to get stitches....he said since my seizures were non- epileptic I did it on purpose.   I most certainly did not!   I am out when they happen...I don't plan them it just happens.

The Dystonia Dr. said the seizure -like things are something we don't understand....I don't understand it either. I am glad he said that and didn't just say I was crazy.

But that isn't the only thing that bothers me..... there is something from the University of Maryland that says I did chest binding! ........why do I even care? 

Well somethings about me are a bit different than many people my age...I don't have a period (but I have breasts...I am small but everything about me is.)...yes I even had a doctor say I made myself that way also!  I don't even know how a person could do that.

I did not make myself this way...God did.

I guess I was worried the Dr.would not give me a chance , that he would just say I was crazy and that would be that.

I always wanted to be a Mommy when I grew up....I guess that is why these things are especially painful to me.

Also.....I don't want to hurt myself...I just fall down and stuff happens.

I don't know why God allowed all this stuff...I just don't understand.

Truman Capote said something like he did not care what people said about him as long as it wasn't true.

Well....I am not him, I care and it is exceedingly upsetting to me.

The only way I calm myself down is I keep telling myself over and over that God knows what it true, God is stronger than man even if they have a white coat and God has a plan.

The truth is out there.
Frustrations...Frustrations.....

Reading My Christmas Capote Book

 Today at i.v. I sat there trying to read my Christmas Capote book, it was a gift from a good friend last year....... I have read it probably at least 50 times.

I read it so many times because my friend was on a trip and it made me feel closer to her,
it went with me to doctors appointments and it went with me inside the hyperbaric chamber. 

the book came with an audio cd, and I would fall asleep listening to it.

So today I decided to read it again and much to my surprise......I had forgotten most of it.

Well.....that sort of bothered me.

Anyway, other than that today was mostly good.

It's rather ironic I think, that the book title is" A Christmas Memory".....and I forgot it!

But if I think about all the stuff my brain has done since I read it last I feel better.